The love—and treatment—that fixed Manuela’s foot
Marina found out that her second child, Manuela, would be born with clubfoot during her first trimester obstetric exam. Her doctor was familiar with the condition and told her it was easy to treat, so she wasn’t overly worried. It was only after Manuela was born, when Marina saw her foot severely twisted, that she understood the urgency of finding care.
Manuela began treatment at one month old with a doctor who was recommended by the family’s health insurance provider. Every Tuesday, Marina and Manuela traveled to the nearby clinic where Manuela received a new cast. Soon though, Marina began to wonder if the treatment was working. Week after week Manuela would get a new cast, but there was no change to her foot. Even after wearing casts for a year, Manuela’s foot was not developing properly. She couldn’t walk, run, or even crawl. “That year was a constant struggle,” remembers Marina. “Taking a bath with the cast on, dealing with blisters on her skin… and the treatment was taking way too long.”
Another red flag was that Marina never saw any other children at the clinic wearing corrective shoes or braces. Her uncertainty led her to discover an online group of families also navigating clubfoot treatment. There Marina saw a video of a mother complaining that her child’s surgery had been botched and, rather than fixing her child’s clubfoot, it made it worse. “We were upset for her,” recalls Marina, “especially since we had also been deceived.” Eventually, they learned that the doctor they had been seeing was not a congenital clubfoot specialist. “That entire time we were being deceived by the doctor. Our desire was to sue her. We even gave it a shot, but, because that meant that Manuela would have to stay at the same clinic for three more months while we waited for the judge to grant us a preliminary hearing, we gave up.”
Fortunately, through the same online group, Marina found out about a well-known doctor at the University Hospital specializing in clubfoot treatment. “When we went to the hospital, I saw that even babies were wearing the boots – a one-month-old baby wearing the boots – that’s when I realized that we had been totally asleep.”
Dr. Laura Ferreira, an orthopedic surgeon at the University of São Paulo, who learned the Ponseti treatment method from Dr. Ponseti himself, immediately began treating Manuela. At their first appointment, and at each subsequent appointment, Dr. Ferreira adjusted Manuela’s foot—something her previous doctor had not been doing—before applying a new cast.
Since Manuela was no longer an infant, treatment and casting were a challenge. Plus, she was more aware of the world she was missing out on. Often, she would see her older sister, Lívia, running and playing and wanted desperately to join her. Marina would tell her: “you can’t go running just yet. You’re wearing the booties, you’re wearing a cast, but you’ll be able to run soon enough.”
Manuela progressed quickly through treatment. After five casts, she wore the brace at night, and when she was 2 1/2 years old, since there were no indicators of possible relapse, she was able to stop wearing the brace altogether. “Manu was walking normally, she could keep up with her activities, ride a bike, run, jump. We were very happy,” recalls Marina.
Marina was of course incredibly appreciative of the excellent care Manuela received from Dr. Ferreira, and equally thrilled that, since her treatment was complete, she would no longer need to explain the casts or braces to prying strangers. “People would ask us if she had fallen, or if we let her fall out of bed…they would ask me if I let her get burned, or if we had hit her, that kind of thing. People would give us a suspicious look, you know? As if we had done something wrong, or as if we hadn’t taken care of her properly.”
“Once we went to the beach and everyone said ‘Oh, how pitiful!’ but I put one of her feet in the water and splashed some water on her so she could feel it. We wouldn’t let her become isolated or feel like a different child.”
Marina tried to ignore the comments and stares, but of course it bothered her when people assumed things about her as a mother. But she chalked it up to a lack of knowledge and a lack of awareness and chose instead to see Manuela’s condition as a rare gem rather than a black mark. “It’s like I was carrying something made out of gold, it’s rare, something people don’t see that often.”
Marina’s recommendation for other mothers looking for clubfoot care: research the doctor, and make sure he or she is truly a specialist in congenital clubfoot. And trust your instincts. Treatment shouldn’t be torturous or prolonged. “Of course, it’s going to be hard, but things will pass, be patient. It’s all about being patient and persevering. You can’t feel sorry for making your child wear the boots. And after that, your child will have a normal life – both the child and the parents.”
In fact, as Marina sees it, Manuela’s treatment journey strengthened their family. “It gave us more strength and made us more mature as human beings.”